MY EXPERIENCE LIVING WITH TUBERCULOSIS (TB)

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I had many questions when I was diagnosed with TB but no answers. The only thing I knew was, this was going to be my reality for the next six to unknown months. The one thing I hated was,one of my resolutions had already been set for me against my will,that is to manage and cure this disease.

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Advanced case of Lymph node tuberculosis

My biggest concern and fear was my family and my twin sister who i live with. I was afraid I would infect them. I didn’t want this on my conscious. The signs you see in matatus (buses) about TB became my reality. They were talking about me.

People in Nairobi are very funny especially in cold weather. You kindly ask someone to open the window and they refuse and even get annoyed at your suggestion. Some days I thought of telling them politely “Don’t get me wrong, I am only concerned for your safety because I have tb.”

When I told my family this they really laughed because you can only imagine the horror on someone’s face when you say such words. Lesson one: you can contract TB from your matatu(bus) neighbour. Please open the windows for air circulation. Well that was the only time my family and I laughed about TB. TB is not a laughing matter.

My doctor explained to me I had extra-pulmonary Tuberculosis in my case it was in my neck. This is where the TB bacteria travels from the lungs to the lymph nodes that drain the lungs. If the body’s natural defences can control the infection, it goes no further, when the defences are down the bacteria then spreads from these lymph vessels to lymph nodes in the neck causing an infection. This kind of TB is rarely infectious due to its nature however I chose to take precaution within the first month of medication when one is most infectious.

The medication period for a first time TB patient is 6 months. The first two months, one takes 4 huge tablets at the same time of the day every day without fail. I chose 5:50 am each morning. In the next four months you still take four tablets but with less dosage and smaller in size. For people living in Nairobi and work in CBD, there is a government clinic next to Kenya Polytechnic university now called technical university. It is called Rhodes health clinic and another at the end of same road after climbing stairs called Loco health centre. This is where I was to be stationed for the next six months.

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They take all your details and history of your illness. Your family members are also required to come and be tested. Your card can be used at any government clinic in case you out of Nairobi. Weekly clinic attendances become a new normal and oh yes TB medication in Kenya is free as long as you are getting it through a government clinic or hospital. Private hospitals charge for this medicine and a lot for that matter

Before I begun the medication I did not feel sick and mostly fine except days’ my neck would act up. When I began taking the medicine that’s when I became actually sick. It is in this period I came to learn medicine is actually a poison we ingest.

The side effects were horrendous and each time I would tell the doctor about it he would remind me the alternative which is death was worse. He would only just give me medication to manage the side effects. So what happens is as you take the medication, the body starts developing other complications that were not there initially. If you can, manage them with other medication but the TB medication cannot be stopped. The only time the doctors can stop the medication is when the side effects are almost killing you, whereby they will reduce the dosage but that means you will take them longer.

As a TB patient I was really wanted to hear someone share their story and how the medication affected them. I didn’t get such stories and that’s why I share this today. The websites and articles I read did not tell me everything. So here are the side effects I experienced personally in the period (Can read more about common side effects of TB medication.

SIDE EFFECTS OF TB MEDICATION

1.The most severe one I got was with my eyesight. They said it would be blurry vision. I did not have blurry vision. I COULD NOT SEE FOR A COUPLE OF DAYS.I almost lost my sight. Thank you Jesus.

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Pictures:When my eyes started aching and becoming strenuous to open and days i stopped opening them completely.

2.Forget yellow pale urine for the next 6 months. Urine is dark orange (Can stain clothes).

3.In first months I had nausea most times.

4.The fever I had was not normal, it felt like I was literally burning. I was very hot to the touch too.

5.My skin generally became very sensitive. Normal sunshine felt like I was being burnt by fire (Please invest in sunscreen.)

6.Constant abnormal hunger (Came to learn the medicines take a lot from someone).

7.Weight gain is real. I gained 3kgs in only two weeks. (Due to hormonal imbalance).

8.Hormonal acne at its worst. (I have never had acne in my life).

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My face before medication.

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My face after medication.

9.Your skin complexion becomes darker. (It will return to normal afterwards).

10.Constant body swellings.

11.Painful muscle or swollen joints (Walking became tough. Wear comfortable shoes and don’t strain legs a lot).

12.Fever for 3 or more days

13.Rash amongst the first months.

14.Fatigue most days but God is gracious.

15.Mental/mood changes.

Throughout the six months, the one thought in every patient with TB is the dreaded Multidrug resistant TB (MDR -TB). When one is not consistent, around someone with it and doesn’t take drug as required, the existing TB has high potential to become MDR -TB. This is highly infectious, medication taken for two years and unfortunately majority who contract this do not survive. By the grace of God, I did not get this.

Lastly within one’s treatment they will be tested for TB using Sputum. This is just to confirm Tb is actually cleared. One also receives two Vitamin A tablets within the period. In the final months (5th Month) TB will be tested for again. Once you are done your file will be closed and discharged.

WHAT TB TAUGHT ME

1.Let it go. If you find yourself in a situation you have no control over, let it go. I was in total denial and did not want to change my lifestyle at all to accommodate these changes. I was on a weight loss journey and was adamant I would continue with my diet as it was, this was until I developed ulcers due to burning effect tablets had on my empty stomach. At this point I was like it is not worth it. All damage can be fixed after the medication for the moment I let it go and was determined not to get worked up about it.

2.Physical beauty is vain. It can be lost at the snap of a finger. My whole body changed and it was like was living in different body. I watched slowly as severe acne ravish my once smooth face, my body grow, weakness set it etc. Wow. How easy this body can be destroyed. One really gets to appreciate the inner beauty when health and ‘beauty’ is failing.

3.Family is an amazing asset and gift from God only they know you at your worst and stand with you no matter what. Of the days they attended to me on my sick bed to the days of heartfelt prayers to God to save me, it is a precious gift.

4.Go to the doctor early enough and don’t under estimate the seriousness of a body issue. If I had waited any longer to go, maybe I would be writing a different story.

5.Stigmatization is a real thing!

6.God is the pillar of our lives. In a split moment one can lose their lives or be reduced to nothing. If it were not for God, only He knows where we would be.

Images:Google images.

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